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‘Our second home’: Family bringing fundraiser for epilepsy research to Towson Town Center

Baltimore Sun - 3/12/2020

Trent Stroup and his daughter Addie, who live in West Towson, often take walks together around the Towson Town Center shopping mall. On Saturdays, the two stop for lunch at the Chick-fil-A.

It’s an important routine for Addie, 15, because she has Aicardi syndrome, a rare genetic disorder that causes seizures, and is on the autism spectrum. Stroup said Addie has the cognitive level of about a 3-year-old.

“When people tell you get married, live the American dream, have kids … nobody ever tells you you’ll have a 3-year-old forever,” Stroup said. “She just doesn’t understand some things. Its the lack of understanding for her, that it’s hard for her to communicate.”

Since Addie’s diagnosis as a baby, Stroup said, “It’s been a hard, long journey.” Stroup and his wife, Tina, started the Stroup Kids for Kids Foundation, an organization that raises money for epilepsy research and helps fund a child life specialist position at Johns Hopkins Hospital, to help other families going through similar, difficult circumstances.

The foundation sponsors triathlon fundraising events, and is gearing up to bring a family-friendly fundraiser to Towson, specifically to Towson Town Center.

On March 28, the Stroup Kids for Kids Foundation is hosting the “Addielicious Walk to Help” at the mall for the first time. Previous walks have taken place at outdoor locations. The walk begins on the first floor of the center and loops around the entire mall for about 1.5 miles, Stroup said.

“We consider the Towson mall literally our second home. We are there every single week,” he said.

The first 100 participants to sign up will get a coupon for a free Chick-fil-A sandwich, in part to recognize Addie’s own personal tastes. Stroup said there will be coffee, bagels, popcorn, ice cream and more for all participants, plus a raffle for larger prizes.

Emily Brophy, general manager at the mall, said she was excited that the Towson Town Center is able to “partner with the community” in this way.

“[The Stroups] are here every weekend; it’s fantastic that we get to contribute in this way,” she said.

The mall has hosted other fundraisers, like a school supply drive, Brophy said, but this is the first time there’s been a mall-wide walk for a cause such as this one.

‘It’s just so hectic’

Stroup said Addie used to have maybe one seizure a month. Lately, it’s been more like one per week. He and his wife both work, so when Addie has to stay home from school, they have to adjust schedules.

“A lot of communication is kind of doing an update, ‘What’s the status on Addie,'” Stroup said. “It’s just so hectic.”

Addie’s condition has made family life difficult at times, Stroup said. He and his wife sometimes hire a caretaker so they can have a “normal night out” with their two other children, Oliver, 13 and Vivi, 10.

Patrice Brylske, director of Child Life Services at Hopkins, said the foundation pays for half the salary of a child life specialist who works specifically with children who have been admitted to the inpatient epilepsy monitoring unit and the outpatient pediatric neurology clinic.

“What makes the admission so hard for those kids is when they’re hooked up for the monitoring, they actually can’t leave the room,” Brylske said. “So what do you do as a kid of any age? And with your parent, when you feel so isolated? You’re limited, you can’t go to the playroom, you can’t see your friends.”

The job of the child life specialist is to help keep the children engaged and active, and also to help them cope with and understand their diagnoses and the reasons behind certain tests and treatments being performed, Brylske said.

“I am very grateful as the child life director to donors who understand that without paying the salaries of people to provide services, it’s really hard to provide that service,” she said.

One way the foundation is helping research is by sponsoring lecture series that bring epilepsy researchers together in the same place, where they can discuss findings and ideas, Stroup said.

As of early March, Stroup said about 50 people had registered for the walk. He said they’re hoping to get at least 200 participants.

If the Stroup Kids for Kids Foundation can keep going, Stroup said, the organization hopes to provide basic care for children with autism or epilepsy so that families can get “respite time" for some sense of normalcy.

Special education families fear that children will not receive enough help during a prolonged school delay due to the coronavirus pandemic

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